First week of Rehab

I haven't posted since I have been in rehab, so I figured I should give everyone an update, if anyone is reading this.  Day one of rehab is just evaluations.  I was hoping I would get my same physical therapist that I had my 1st 2 admissions, but I saw someone from a different floor for my evaluation.  She wasn't going to be my therapist and didn't  know who I would have.  My OT wasn't the same either.  I had a different one in March/April and in July.  I had worked a few times with the  one I got though and  I like her.  My PT, Kelsey, was my second choice if I couldn't get Victoria back.  I know, you probably don't care, but I might want to remember  this later.

Evaluations,Thursday November 29th- I can sit on the side of the bed now but I'm still  a little unsteady.  I can't move my legs but I can wiggle my toes just a tiny bit.  If you blink, you will miss it.  My arms are weak.  I can lift them up to my head but not all the way over my head.  I can transfer from the bed to the chair with the transfer board but it takes a lot of effort and  leaves me exhausted.  PT tried to get me to stand but she had to pull me up most of the way and hold me up the entire 10 seconds so I don't really think that counted much.  She said she could feel a little bit of muscle activation when I did that though, so the potential  is there.

Each day I have gotten a little bit stronger, gotten a little bit of movement back here and there.  I have been sore and tired.  I felt like I have been working out with heavy weights for hours on end rather than just 1# weights and trying to move my own legs.  On Monday, I started pool therapy.  In the pool, it is so much easier to move around and walk. The 1st day in the pool 2 days ago, I walked about 6 feet and I had to rest half way there.  Today, I did 2 laps of 6 feet in the pool before I had to rest.  Yesterday, I walked 8 feet on land with a walker.  My core strength is almost back to normal.  I can tell I still have a little bit of work to do because my abs and obliques are sore after therapy.  All of this therapy has really kicked up my muscle spasms.  At first, the spasms would help activate my muscle movement.  Now that I can get the muscles activated myself, the spasms just make my muscles more fatigued.  Tomorrow, my doctor is going to make adjustments to my baclofen pump to help those spasms.  It is a fine balancing act.  Too much baclofen and my legs get weak, not enough and I have muscle spasms.  For the most part, my dose is spot on and I only have to have it tweaked occasionally.  It was one of the best things I had done.

I am scheduled to go home on December 12th.  I am confident I will  be ready to go home.  I may not be walking very much, but enough that I can stand at the kitchen stove to cook and stand up to get the higher things I need in the kitchen, especially since I will be home alone during the day.  I am a little bit nervous about that part.  I have never been home alone when I first come home from the hospital.  I have always had someone at home to help me.  I am sure that  I will be fine.  I usually didn't  need the help but it was nice to know that Andrew was there if I needed him.

I'll be posting the next part of my weight loss journey soon.

I haven't fallen off the edge of the eath

Just in case you were wondering, I am still around.  Life has just gotten busy.  I think I need to put "write on blog" on my calendar because then it will get done.  PT and doctors appointments have become my full time job since my last big hospitalization.  During my last episode of paralysis, it turns out my bowel was damaged, so I have pelvic physical therapy once a week, pool therapy once a week and regular PT once a week.  I go for my weigh-in at Ideal Protein once a week and usually see the chiropractor while I am there.  I almost always have at least 1 doctors appointment each week.  The week of Halloween, I have 3.  Having a chronic illness is a full time job.  I have to factor in a lot of drive time too since we moved out to Del Valle.  All of my doctors are at least 25-30 minutes away and a few are 40 minutes away.  I would really love to have a more energy efficient vehicle.  Handicap vans are not the most energy efficient things.  They are always big and the equipment weighs a lot.  I really didn't think I would still be driving a van when  I didn't need it to chauffeur kids around.  I would love to be able to drive a smaller car.  I am so grateful to have this van though and that we were able to inherit it from Stan's mom when she passed away.  These handicap vans cost double the  cost of a regular van.

Last week I  had my 4th hospitalization for the year.  I have broken 2 personal hospitalization records this year.  Not somethings I was trying to do.  First, longest hospitalization - 5 weeks.  Second, most hospitalizations in 1 year -4.  My previous record was 3 and all 3 of those were fairly short, like 2-3 days.  This year I have spent over 8 weeks in the hospital.  Now I bet you want to know why I was in the hospital.  It was actually planned.  I had to have my baclofen pump replaced.  The battery was almost dead so we wanted it done while my deductible and  out of pocket max were still met.

This surgery was much easier than the initial placement.  Only had to be in the hospital over night.  I was in the hospital then in rehab for 2 weeks last time.  The worst part of the recovery has been  unrelated to the surgery.  I have a condition called autonomic dysreflexia.  It developed after my 2nd paralysis episode.  This means the autonomic nervous system doesn't regulate itself the way it should.  The autonomic nervous system controls all of the nerves that are involuntary like in your heart, blood vessels, lungs, sweat glans, hair follicles and many other areas.  This disorder is common after spinal cord injuries and can happen in things like Guillan Barre or multiple sclerosis.  My paralysis episodes are very much like Guillan Barre, they just don't fit the diagnostic criteria because of some of my test results.  So, after we got home from the hospital, my skin started feeling like I was sunburned everywhere.  I have had this a few times but not  really since I started IVIG.  This is the one symptom I have a hard time dealing with.  I can never get comfortable.  The breeze from the ceiling fan makes my skin burn.  There were some strange things with it though.  I was getting goosebumps everywhere off and on.  There was a lot of pain associated with the  goosebumps.  They are the worst on my legs.  Also my legs feel like I haven't shaved in several days despite the fact that I have shaved twice since my surgery.  It's like the goosebumps are pushing the hair follicles out more.  If  anything rubs on those stubbly areas, it hurts even more.

I have found nothing that gives me any lasting relief.  Stan gave me a blessing and commanded the nerves to begin healing and the pain to ease.  I have pleaded with God to take away the pain multiple times and asked him what I needed to do to get rid of the pain.  I've broke down into tears a couple of times a day.  Early Saturday morning I really broke down but decided I needed to approach this a bit differently.  I prayed to god and told him I was going to turn this over to him.  I asked him to help me have faith in the blessing Stan gave me.  Then I asked him to inspire me that  I would know things that would prevent the  pain from getting worse.  I immediately received some very clear instructions.  These instructions not only kept my pain from getting worse, but I actually experience some improvement.  Sleeping has been difficult for me, but I have been able to sleep on my side better than I usually can.  The really strange thing is that I wake up hot but it I remove the covers, or even just the top blanket,  then I get goosebumps and I am in more pain.  I am really hoping my AD was just triggered by the surgery and the pain.  I really don't think I could deal with this on a daily basis.

Progress Report

It's been a few days since I updated this because it's been just the same thing going  on every day here.  I've been going to PT and OT and getting a little bit stronger each day.  Today we added pool therapy.  Here is a break down of the things I couldn't do when I got out of the ICU but I can do now.  Some of  them are pretty small things, but are a big deal for me.  They are big steps toward independence even though they seems like such small things.  First of all, I can  roll over by myself and position myself in almost any sleeping  position.  I still have a little bit  of trouble if I need to position pillows under or between my legs but I can  get into a comfortable position on my own.

2nd, I can sit on the edge of the bed without falling over.  The last day that I was in ICU, the therapist had me try to sit on the edge of the  bed and  I  could not hold myself up.  I still have a little bit of  weakness in my trunk that shows up at various times, such as when  I am trying to stand, when I was in the  pool, and when  I am trying to bend over to pick  something  up from a sitting position and coming back up (like if I drop something)

3rd, I can transfer from my chair to the bed and vice versa independently.  I started doing  this  independently only 48 hours prior  to going to the ICU.  It's the quickest way for me to get in and out of bed.  This became possible only because my trunk became strong enough to hold myself upright.  I used a slide board to do this transfer.  The slide board created a bridge between  the chair and the bed or whatever else I am transferring to and I slide across the bridge.

The biggest thing is I can stand a little bit.  This allows me to do a stand pivot transfer to the toilet from my chair..  Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery.  Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet.  This gives me a huge amount of  freedom when I am out in public.  I won't have to carry my slide board with me when  I  go places or have to figure out  how to maneuver in a handicap stall that is just a little bit too small.

Overall, my strength is coming back too.  When the doctor does a neuro exam,  they assign a number to each  extremity for strength ranging from 0-5.  A score of 5 is a normal, strong extremity with no deficits.  It's been a long time since I have scored a 5 on a neuro exam.  A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid.  When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone.  It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement.  When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities.  Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+.  These numbers are a huge improvement from my ICU time.

I have 1 more week in rehab and then I get to go home.  It seems like I have been here forever.  I am so ready to go home.

Big leaps forward, then 1 step back

I will warn you THIS POST CONTAINS MANY TMI STATEMENTS SO READ AT YOUR OWN RISK
I know that  is not how the saying  goes, but I  feel as though I took  more than  steps forward for my little step back  today.  My sleep was really off last night despite Dr. Latorre having me on scheduled sleeping pill.  I've never taken a sleeping pill regularly, or even as needed.  I've taken Ambien once and that knocked me on my backside.  I got 1 Ambien tab before I left the hospital after going in for preterm labor and getting a bunch of shots to stop it (the shots make you very jittery).  I don't remember getting  home, and then I slept for 22 hours straight except for stumbling to the bathroom  every few hours (I was pregnant)  Because of that experience, I shy away from sleeping pills.  However, Dr Latorre (my rehab Dr in case you don't remember) wants to make sure I am getting adequate sleep so he  has ordered a sleeping pill to be given every night.  Last night, not even that was enough because I kept waking up to pee   When you can't walk to the  bathroom and you have to use a catheter to pee, this can take quite a while and can result in being wide awake when you are done.  Despite being careful not to drink too much after 8pm, I had to pee 3 times last night.  Sometimes it was a lot and sometimes it wasn't.  Then I started itching a lot which is one of my annoying MS symptoms so I put lotion on the effected areas, benadryl cream and finally just asked for some oral benadryl.  I had 3 bouts of sleep that were 2-3 hours each.  I was not ready to wake up.

Now this am, when the nurse took my am vitals, my BP was 100/56.  For those of you who are not medical, this is a low BP.  It I  was someone who was walking, it could have made me faint when I stood up out of  bed.  Since I was moving to the wheel chair, that wasn't a problem.  We did hold my diuretic which keeps my legs from swelling because I am in the wheelchair all the time.  I had some dizziness during PT a short time later and my heart rate was pretty fast, like 120.   My BP was good after a few hours of drinking a lot of fluids. My HR has been up most of the day, higher than my norm of 95-105.  I kept having to pee really frequently though but only had small amounts.  Usually I can only tell if my bladder is full when I have more than 750cc of urine in there but this am it was 200-300cc and I felt like I was going to burst.  A urine culture has been sent but the urninalysis was normal so we will just have to see how the culture comes out.

While all of this was happening this morning, I started having some muscle spasms again.  I would have been perfectly happy if they never came back and they took my pump out. This is one of  the biggest reasons all my doctors and  I were sure I had a UTI. No change in dose on my pump today.  We will see what happens with my spasms today.  I did get the OK to do  my bed to chair transfers alone today, but I can't go to the bathroom by myself.

I my speech and cognitive therapy today, I was given the game Luminosity on the tablet as my homework assignment.  It was challenging but I was surprised to find out when it scored me that I did better than 20-39% of the people who are my age

Progress Report

I'm not going to report on the things I did today because frankly, it's the same things every day as far as therapy goes.  I will tell you about the great progress that I has become most apparent today.  When Dr. Latorre came in to adjust my pump more today, he assessed movement, strength and spasticity/tone.  Still no spasticity or tone, which is still so strange but I could more my right foot at the ankle rather than just the toes and my left one actually moved some at the ankle.

In the therapy gym. I stood quite a long time with support.  I was able to take a few very small steps with assistance.  I think if my foot didn't drag so much on the ground I might be able to take bigger steps.

In the pool, I walked about 20 feet although the PT had to scoot the  rt foot along.  I can do a lot more exercises in the pool and have more movement.

I also worked with the speech therapist today on strategies for when I forget words or when I replace words with wrong words.  Many of them were things I am already doing.  We also discussed memory strategies.  I used to have a sharp memory.  Now it's as dull as a ball.  I do all the things she suggested there too.  Use a calendar, use a check list, keep notes in a smart phone or notebook. Set alarms for things.  These are all things I do on a daily basis so I don't forget appointments, things I have to do, projects I want to do, grocery items, medications, etc.  I'm glad I'm an organized person or I could never keep it all  straight.

Sleeping pill is kicking in again so I am off to the land of ZZZzzzzz.

More transfers and more standing.

The 1st full day I was here, I was asked what my goals were.  I said I wanted to be as independent as possible so I didn't have to rely on my family for my basic needs such as ADLs,  I have always greatly valued my independence.  I am willing to ask people to help me do things so that I can preserve my energy but I don't want to have to have people do the most basic things for me.  I don't want to be pitied or treated like I am weak.  My legs are weak but I am not weak.  I may not be able to make a big family meal, but I want to be able to make my own meals for myself or heat up leftovers.

Next,  I wanted to be able to stand so I can do my weight checks for my Ideal Protein diet.  Being that there is a big gap in this blog, it is not really clear here that I have lost 60 pounds since June 19 and I have 40 more to go.  I need to be able to weight in weekly to monitor my progress.  It's possible to weigh in a wheel chair but it is a pain in the butt.  Worse case scenario I would make an arrangement with Dr. Latorre (my rehab Dr.) to weigh at his office every week or 2.  I would prefer to use the IP scale because it tells body fat and lean body mass but this would only be worse case scenario.  I am well on my way to being able to stand on the scale though.  I have been  able to stand at the parallel bars with lots of extra support.  I can shift my weight side to side.  The strange thing with standing up is that I  can't feel my muscles engaging when I stand.  The staff tells me my legs are doing all the work but I don't have any control over it and I can't feel the muscles doing anything.  There is an exercise bike I use that can tell us when my muscles kick in and when they are just flaccid - it all feels the same to me.  It is very strange.  It is also very strange that there is NO tone in my legs and no muscle spasms.  We are still decreasing the baclofen dose since I don't need it.  Dr. Latorre has cut it in half or more in the 10 days I have been in the hospital

To be independent, I have got to master these transfers and that has been harder than I thought.  I've mastered transferring from the bed to chair and back.  I'm getting pretty fast and it's pretty smooth.  The toilet and the shower are another story.  I think it's managing the clothing.  I won't get into detail because that  is TMI.

Lastly, I will probably get a speech therapy evaluation.  I don't know if anything will come of it but we will see.  Any of you who converse with me regularly know about the problem I have with switching words so things don't always make sense, forgetting words, not being able to say words properly, etc.  I only scored a few points under passing but it qualified me to have an evaluation.  I'll post about it after I have it

Evaluations, Friday 3/30

Friday, March 30th, 5pm  I completed the 1st day of rehab and I am exhausted.  It started bright and early at 7:30am with my PT evaluation.  He asked my a bunch of question about previous ability, how my house is set up, equipment I have at home, help I have at home, including home health (only for my IVIG).  Then he assessed my movement, spasticity and strength and that was the really strange part. All the doctors have been testing my movement and strength every day and Dr. Latorre tests my spasticity a little bit but this guy really tried to elicit the spasm and there was nothing. No tone, not even a little spasm.  We worked some more on transferring into the chair from the bed. I’m getting pretty good at it except my feet get stuck. Then I had OT after breakfast, I got to take a real shower. That felt so good. I had to have a lot of help with that too, partially because this bathroom is poorly designed to be used by someone in a wheelchair.  The shower is just a little bit too small and the shelf for the shampoo and body wash is at the opposite end of the shower from the water, which means once you are in the shower, the shampoo is behind you and you can’t reach it. Being that it was my 1st time in the shower, the therapist wasn’t going to leave me anyway. She wanted to assess my abilities and be available to help me as needed.  There is really no such thing as modesty in rehab. When you have a baby (I’ve had 3) your modesty is gone from the time you come into the hospital in labor until you deliver your baby and the placenta and get stitched up if you need that. Your OB is in there and 2-3 other staff, maybe more. When you are in rehab, someone helps you get dressed, take a shower, go to the bathroom every day for 2 weeks. I have had 5 people see me naked or mostly naked today.  Rehab trumps child birth for tearing away your modesty any day.